PKD Life - Summer 2022 - 3

THOUGHTS FROM ANDY
You Are Your Child's
Best Advocate
We can help you find the resources
and programs you need.
I n this issue of PKD Life, you'll find two features
Another initiative we're excited about at the
Learn more
about our
ambassador
and mentor
programs at
pkdcure.org.
about children with ARPKD, and how important
it is for parents to be strong advocates for themselves
and their children.
As the father of three children, two of whom have
special needs, I've learned that we as parents are the
best advocates for our children. But it's not always
easy to do, especially if you're dealing with a littleknown,
little-understood disease like ARPKD. We
know that it's not uncommon to find yourself having
to educate and inform even medical professionals.
At the PKD Foundation, one of the ways we
encourage self-advocacy is through our ambassador
and mentor programs, which help patients and
families who are new to the PKD community find
support and learn more about the programs and services
they need. In our next issue, you'll read about
the Foundation's new Peer Ambassadors Program,
which is meant to build new bridges between the
Foundation and previously underserved communities,
including communities of color.
LIFE
PKD FOUNDATION
CHIEF EXECUTIVE OFFICER
Andy Betts
CHIEF OPERATING OFFICER
Carmen Gleason, MHRM
CHIEF RESEARCH OFFICER
Chris Rusconi, PhD
CHIEF PHILANTHROPY
OFFICER
Jon Rich
BOARD CHAIR
Rob Roth, MBA
BOARD VICE-CHAIR
Navin Manglani, MBA
TREASURER
Christopher Wess, MBA
SECRETARY
Amy Omenn
SCIENTIFIC ADVISORY
PANEL CHAIR
Michal Mrug, MD
ISSUE CONTRIBUTORS
Susan Blumberg; Mary Beth Callahan, APHSW-C, ACSW/
LCSW; Susan Caplan; Peter Carek, M.D.; John Clouston;
Leeanne Cobb; Ryan Dearbone; Shima Fazelimanesh, R.D.;
Carolyn Garrott; Cindy Guentert-Baldo; Ashima Gulati, M.D.,
Ph.D.; Christian Hanna, M.D.; Rachel Homewood; Michele
Karl; Deborah Kelly; Carita Logan; Kristen L. Nowak, Ph.D.;
Joseph Reni; Diane Siebrasse; Stefan Somlo, M.D.; Melissa
White; Franz Winklhofer, M.D.
EXECUTIVE EDITOR
Sydney Johnston; SydneyJ@pkdcure.org
CONTRIBUTING STAFF
Elise Hoover, MPH; Nicole Harr; Shanna Eiklenborg, MBA
EDITORIAL, DESIGN &
PRODUCTION MANAGEMENT
MANAGING EDITOR
Donna Behen, donna.behen@manifest.com
ASSOCIATE CREATIVE DIRECTOR
Tami Rodgers
SENIOR PHOTO EDITOR
Leah Rudolfo
VP, PRINT PRODUCTION
Laura Marlowe
PRODUCTION TECHNOLOGY
SPECIALIST
Marilyn Bain
This material is provided for your general information only. You should not use the information in this magazine as medical advice, but should always consult your physician or local treatment center before pursuing or deciding to forgo any course of treatment.
PKD Life is published quarterly by the PKD Foundation (PKDF), 1001 E. 101st Terrace, Suite 220, Kansas City, MO 64131. 800.753.2873, toll free 800.PKD.CURE. The opinions expressed are those of the authors alone and do not represent the opinions, policies, or
position of the PKD Foundation, the Board of Trustees, the Scientific Advisory Committee, or editorial staff.
Acceptance of advertising for products and services in PKD Life in no way constitutes endorsements by the PKD Foundation.
©
2022 Polycystic Kidney Disease Foundation.
Foundation involves educating physicians about
PKD and helping to establish consistent standards of
care and clinical practice. Over the next 12 months,
you'll hear more about how we will be accrediting
centers across the U.S. that meet those standards of
care, so that we can let patients and families know
where they should go for treatment and to get
involved in patient-centered research.
If you have comments about anything you
read in this issue, or thoughts about what we
should cover in future issues, send us an email at
pkdlife@pkdcure.org. We always welcome your
feedback and ideas.
Andy Betts
President and CEO, PKD Foundation
READ AND SHARE THE DIGITAL ISSUE AT PKDCURE.ORG/PKDLIFE
3
PKD

http://www.pkdcure.org http://www.PKDCURE.ORG/PKDLIFE

PKD Life - Summer 2022

Table of Contents for the Digital Edition of PKD Life - Summer 2022